Stimulants - Any Benefits?

[cmpman1974]

The 6-year old study you posted actually confirms a history or the V/Q mismatch we have been discussing in this thread for some time. This explains the hypoxemia you have consistently shown without supplemental oxygen.  The real question is whether that issue has progressed.  With that history, and your problems with maintaining an normal SpO2, there should be plenty of reasons to follow-up with a Lung Scan Ventilation Perfusion study to see if this has progressed.  It seems pulmonary embolism was not identified as a cause in the 2017 study, and if progression is slow, that probably remains the case.  In any event, your need for supplemental oxygen should be medically confirmed and evaluated.  The linked article notes some compelling symptoms consistent with your complaints and describes the diagnostic process with a perfusion/ventilation lung scan. https://www.verywellhealth.com/what-is-v...ngs-914928

I admit I am clueless on how to read these lung scan reports.  From the language, it seems like they are claiming most abnormalities are artifacts.  How do we know they aren't?   It does seem like little to no effort was made over the years to confirm/disprove this initial finding.  My pulmonary doctor specializes solely in Pulmonary Hypertension.  The office is laser-focused on this disease.  They are very nice doctors, but they shy away quickly from other issues in my experience.  Most other findings result in me being referred out to wherever regardless if they are able to understand/handle/treat the problem in reality.  It's a tough path.

[Apnea23]

Yes overeating always for sure.  It's been an issue since childhood.  Never could or able to swim.  Always felt like I sink like a rock.   Total mouth breather - always.  No nocturnal bed wetting.    I see a new pulmonologist tomorrow.  I hope for once someone takes me seriously.  I try SO damn hard to be prepared.

This is how easy we fall through the cracks with life-long, chronic lung issues/disease that existed since birth.

I thought I had social anxiety all my life.
I thought I had ADHD my entire life when I was diagnosed 1 year ago with it before I was prescribed stimulants.

I have none of these things, but the lack of stable o2 caused them both. I can feel it all kick in after the first meal of the day. If I skip breakfast and don't do much activity, I feel fantastic and sharp.

The rabbit hole is deep!

The drive to eat is not greed. It's a nervous system in a constant panic driving the cravings. Same reason we can be so innatentive, forgetful and "zone out" during films, conversation. 

Our true potential and level of mental and physical functioning is buried underneath a hyperactive nervous system and unstable o2.

15-30 minutes after food and up to 2 hours after you will probably feel your worst? This is when o2 requirements are their most outside of activity. I know as soon as I intake food or walk around, my o2 levels will start to struggle as central blood pressure is lowered due to the digestive system requiring more blood flow, and I will feel my most stupid and anxious then. 

Food and activity is like putting our body in to fight mode. It literally puts the fear of God in to our brain and nervous system.

Eating a meal and then being active afterwards is the worst thing we can do, as is snacking inbetween meals as then it's perpetually worse o2 issues with no coming back to baseline. But the anxiety generated after meals drives us to try and soothe it with more food.

The mouth breathing during the night is nocturnal o2 rescue operations.

Every breath we take is just /wrong/. We are constantly over and under correcting to stabilise o2 and co2.

Good luck with the new pulmnologist, and can I just say.. whatever negative things you have felt about yourself over the years due to this crap.. none of it was true and it was the lungs all along.

[cmpman1974]

Well, I may have found a pulmonologist that is much better than others I've seen. The whole office is quite willing to look into things and we seem to be on the same page. After speaking to the doc for 5 min, the first thing said was why is no one doing an overnight pulse-ox study with your BPAP being used to confirm / deny the SPO2 issue. I have tried to get this from 6+ physicians with zero luck.

I did the overnight SPO2 study using a Nonin 3150 WristOx2 unit. This is certainly a big step up quality wise from a Wellue CheckmeMax O2 wrist monitor. The finger monitor is light years better. Unfortunately, these run about a grand with the software. I wish I had one. The silicone finger clip is so much more stable than the cheap silicone ring used with the CheckmeMax. It literally removes all chance of a poor connection at the end of the finger.

I talked to the doc's medical advisor today for quite a while. She said the results are quite unusual....things go well and then 3-4 hrs in boom SPO2 drops well below 88% for 30+ min. She said she rarely sees things like this and usually a patient has waxing and waning low SPO2 levels. When my oxygen dropped, the pulse rate also dropped. She was wondering if it may have been some constriction or the position I was sleeping in. Well, my CheckmeMax also showed a drop 3-4 hrs into my sleep.

They want me on an oxygen bleed at night for a week and then they will re-run the overnight test. Also doing full PFTs, chest x-ray, and likely an updated perfusion scan. We both agreed there is no way in hell these SPO2 drops are related to OSAs or CAs (have barely any). I'd be dead if I stopped breathing for these long intervals! The pulmonologist said it's not Obesity Hyperventilation Syndrome as my PACO2 and PAO2 on the ABGs were normal range. I believe they may re-run them though. I am not sure what the issue is, but pretty confident this is OSA with underlying comorbidities. Too many independent tests have confirmed SPO2 to drop sporadically to be artifact. Even if I was sleeping on my side compressing a cord, I had monitors on BOTH wrists and fingers. Hard to double-compress.

Whatever the issue is, I'm sure it's not too good. The thought of desaturating like that for that prolonged period during the night is very concerning. Also, note the SPO2 drops occurred in time periods where mask leaks were minimal and my BPAP machine reported no apnea events. Makes it more intriguing.